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ONC officials are all-in on giving patients their data

Sharing patient data, no matter how complex, is clearly a high priority for ONC and CMS moving forward. (Getty/AlexRaths)

LAS VEGAS—Top officials with the Office of the National Coordinator for Health IT didn’t mince words when it came to new federal initiatives designed to give patients control of their data.

“It’s a paternalistic attitude on the part of doctors like me to think that patients don’t want the data or aren’t ready for it,” Jon White, M.D., the deputy national coordinator at ONC, told reporters at a press briefing on Wednesday. “There’s a lot of folks that are ready and eager and really irritated that they can’t get their data.”

White echoed comments from National Coordinator Donald Rucker, M.D., who rebutted a physician that approached him after his fireside chat at HIMSS18 on Tuesday evening arguing that medical records data would be too complex for patients to understand.

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Earlier this week, Centers for Medicare & Medicaid Services (CMS) Administrator Seema Verma announced two new initiatives—led by the White House Office of American Innovation—to get health data in front of patients. Rucker said ONC has “a dozen meetings a week” with CMS to talk about issues like interoperability and APIs, which is fueled by a “deep interest” from CMS and the White House to allow the private sector to compete on information sharing.

It’s certainly not the first time health IT officials have supported the notion that patients should have access to their health records, but it's clear ONC and CMS are making this a high priority moving forward, and that there will be repercussions for those that fail to fall in line. Verma issued a specific warning to providers and insurers this week that data blocking would no longer be tolerated.

A survey published last year showed patients—particuarlly tech-savvy ones—are eager to get that data and contribute some of their own. Ninety-four percent of patients wanted to integrate data from wearables into their medical record and 89% wanted access to more information.

Genevieve Morris, the principal deputy national coordinator at ONC, pulled from her personal experience, explaining that because she has hyperthyroidism she persistently checks her labs even before her doctor, and often initiates a request to adjust her medication.

John Fleming, M.D., the deputy assistant security for health technology reform, and a longtime family physician, said he was at times uncomfortable with the unbridled trust that patients placed in him.

“I felt like that was asking too much of me,” he said. “I’m fallible. I can make mistakes. It really became obvious that physicians and patients should be a team. I think that’s the future of healthcare, and the only way you can be a team is to share data.”